What not to say to women with hemophilia

Always approach conversations with empathy, respect, and an open mind

Jennifer Lynne avatar

by Jennifer Lynne |

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I rarely disclose my diagnosis of hemophilia B and von Willebrand disease to others. I don’t like to speak about it, which is odd for someone who writes a column on the topic.

Writing is different, though. I hope it will make a difference. By sharing my experiences, I hope to help other women with bleeding disorders feel less alone and more empowered. I want to raise awareness and advocate for better treatment and care.

More women are coming forward to speak about their bleeding disorders and experiences. When speaking to a woman with hemophilia, I encourage you to be sensitive and understanding. Following are some things you should avoid saying.

“Are you sure you have hemophilia? It only affects men.”

Hemophilia can affect both men and women, although it’s rarer in women. Questioning or doubting my condition can be dismissive and hurtful. This happens most often in medical settings, such as the emergency room. For this reason, I carry a letter describing my diagnosis and treatment.

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“You shouldn’t do that. It’s too risky.”

Growing up in the 1970s and ’80s, I stopped participating in activities like dance because I was frequently injured. The athletic director at my high school wouldn’t let me practice on the varsity swim team, deeming it too risky. Treatment options were scarce back then.

Times and treatment options have changed. Today, many men and women with hemophilia participate in sports and use medication to prevent bleeding. While it’s essential to be aware of potential risks associated with physical activities, assuming a woman with hemophilia shouldn’t participate in certain activities solely because of her condition can be patronizing. Encourage her to make informed decisions about her treatment and capabilities.

“You’re lucky you’re not a man with hemophilia.”

Comparing my condition with that of a man with hemophilia minimizes my experiences and challenges. I have faced unique struggles as a woman with hemophilia. For example, I could not have children due to bleeding problems. It’s essential to acknowledge and respect the unique struggles that women with hemophilia face.

“You shouldn’t have children.”

It’s not your place to comment on family planning decisions. Today, women with hemophilia can have successful pregnancies with proper medical care and support from healthcare professionals.

“Are you sure you are having a bleed? I don’t see blood.”

I hear this often with internal and joint bleeds. Just because you don’t see blood gushing from my body doesn’t mean I’m not bleeding internally. For example, I knew I was having a bleed when I broke my foot. A podiatrist questioned this because they didn’t see blood.

“You must feel so limited in life.”

While hemophilia can present challenges, it doesn’t define a person’s life. Focus on strengths, abilities, and accomplishments instead of making assumptions about limitations.

Remember, every individual’s experience with hemophilia is unique, so it’s best to approach conversations with empathy, respect, and an open mind.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.


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